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Health: Multiple Sclerosis

Volume 728: debated on Tuesday 7 June 2011


Asked by

To ask Her Majesty’s Government how many multiple sclerosis nurses there are in England and Wales, and what proportion of people with multiple sclerosis do not have access to a specialist nurse.

My Lords, the information requested is not collected centrally. In England, it is the responsibility of local health bodies to make decisions on the number of multiple sclerosis nurse posts and for local providers to ensure that they have a workforce skilled to deliver these services.

Does the Minister agree that the majority of patients suffering from MS do not have access to an MS nurse and that the absence of an MS nurse makes it very hard for patients to live independently? Does he further agree that the absence of an MS nurse puts enormously more pressure on consultants and GPs?

My Lords, the Government recognise the very valuable contribution made by nurse specialists. It remains our view that local providers should have the freedom to determine their own workforce based on clinical need as they assess it. The commissioning consortia that will be in place subject to the passage of the Health and Social Care Bill and led by clinicians will recognise that nurse specialists have an essential role in improving outcomes and experiences for patients. That is part of the key to ensuring that these valuable posts remain in place.

Is the Minister aware that specialist nurses play an increasingly important role in the care not only of patients with MS but of patients with many other neurological diseases, including Parkinson’s disease and epilepsy? Is he aware also of recent reports to the effect that some such specialist nurses, even a few funded by charities, have been required by employing authorities to undertake general nursing care to the detriment of the specialist care that they should be offering such patients? Will he take action to prevent that?

My Lords, I am aware of those reports. We have received concerns from most, if not all, of the neurological patient groups, as the noble Lord mentioned. He might like to know, however, that to help trusts develop specialist nursing roles, the department published some time ago a guidance document, Long Term Neurological Conditions: A Good Practice Guide to the Development of the Multidisciplinary Team and the Value of the Specialist Nurse. That was created in conjunction with a number of healthcare charitable organisations. It outlines why services for neurological conditions are important, it shows the importance of those multidisciplinary teams, and it clarifies the contribution of specialist nurses.

What is the position when a specialist nurse for MS or any other condition—I declare an interest as I have a daughter with MS—leaves a hospital and the hospital decides that it is not recruiting any more people? I know that local providers are independent, but can the department give some sort of guidance that specialist nurses should not be overlooked when they replace staff and that they should consider the special role that they have carried out?

My noble friend makes an important point. The guide that I have just referred to in answering the noble Lord, Lord Walton, emphasises the important role of specialist nurses in the care of patients with neurological conditions. However, the key in the future will be better commissioning at a local level joined with better workforce planning at a provider level. If those charged with training and workforce planning tap into the commissioning plans that commissioning consortia determine, we will have a genuinely joined-up system that is also informed by the patient’s point of view.

My Lords, does the guide to which the Minister referred have anything to say about keeping records? MS patients, their families and carers always report that because it is an illness with long periods of remission—sometimes lasting years—the difficulty of keeping the records up to date causes them distress.

The noble Baroness makes a very important point, and she is right. I will have to check whether the guide refers to that issue. I would be surprised if it did not. However, the central point that she makes is quite correct. The key to this, as so often, is good communication between those providing care at every stage of the care pathway. Sometimes, unfortunately, that breaks down.

Can the Minister tell the House what means the Department of Health has for monitoring the reductions in these multidisciplinary teams to which he has referred? There is evidence, at a local level, of quite serious reductions at present.

The problem is that, historically, there has been no requirement to publish information on the number of multiple sclerosis nurses. The NHS Information Centre for health and social care extracts data from the electronic staff record and quality-assures the data prior to publication in the non-medical workforce census. The qualified nursing, midwifery and health visiting staff group is broken down only by area of work, so it is quite difficult to keep a handle on this.

My Lords, many people with a long-term condition such as multiple sclerosis are usually in their prime of life and in employment when they are diagnosed. It is therefore important to their well-being that they can continue with that employment as long as they are able to. Can the Minister say whether the government-led initiative Health, Work and Well-being is supporting these people and whether he is satisfied that all employers understand that those diagnosed with multiple sclerosis are protected by the Equality Act and the Disability Discrimination Act, depending on where they live?

My Lords, I am personally involved with Dame Carol Black in a work stream under the Responsibility Deal, which covers health in the workplace. Under that banner, we are emphasising to employers how important it is to understand the circumstances and needs of employees with a long-term condition. I will, however, go back and see whether I can provide my noble friend with a fuller reply.

My Lords, is the noble Earl aware that today I have received two letters, both from ME sufferers who have long-term neurological conditions? One of them has just been sacked by the National Health Service and the other has just been sacked by local government, for which she works. Can the noble Earl say what protection these people have in their workplace? Neither the NHS nor local government seems to understand that ME is a fluctuating condition and that the disability Acts require employers to make allowances for this.

My Lords, I hope the noble Countess will allow that ME is a different issue from MS. I would be very happy to answer a question on ME on another occasion.